CP Clinic appointment is over!

Oh...My...Goodness!!! We spent four hours at a miserable clinic to really accomplish nothing. The orthopedist said that he is very happy with how well Emily gets around and doing any kind of heel cord lengthening surgery will actually make her worse. I was happy to hear that since I can't imagine sending her in for more surgery right now. When I talked to him about the pain Emily has in her left leg due to it holding all of her weight, he said that there isn't anything we can do about it. He said, "Just let her rest when she needs to rest." Yeah, thanks. We didn't know that. (notice a little sarcasm here?) I questioned him about how it could possibly hurt her back because she stands lopsided and leans more on one side. He said that we will just watch her and look for scoliosis when she gets a little older and is around puberty age. By then we may start to see a problem, but we'll deal with it then.

Emily was then weighed and measured to check her growth. She is staying consistently in the 3rd percentile for her age. That is pretty much where she has been her whole life. She is just going to be small.

We eventually got to see the neurologist. I've never been overly confidant with this doctor because of the misdiagnosis we received a couple years ago. I did get the chance to let him know that when I was there the last time, I was extremely upset and concerned about those headaches she was having that were not related to her shunt. At that time he just slapped a prescription in my hand and said that she had migraines. I never gave her the meds and I kept searching for answers. That is when we found our new neurosurgeon and found out that she has a Chiari Malformation. He instantly shook his head and said, "No, I don't think she does have a Chiari because she didn't have one present at birth." I know this, and I told him that her Chiari was the result of trauma to her brain. I explained how her old neurosurgeon said her shunt was fine when in fact she was in total shunt failure (Emily was two at the time). She was left lethargic and almost unresponsive in the hospital for a week while she was poked and prodded and had all kinds of other tests run on her. It wasn't until my pediatrician INSISTED to have her shunt checked again that the neurosurgeon then detected the failure. The extra pressure that she had in her head for that long is what probably caused the Chiari. I told the neurologist that this diagnosis was missed by the radiologist who read her MRI at that time, and we were blown off by the neurosurgeon at that time and also by him. (I said it in a tactful way, though.) I still don't think he understood what I was saying because he kept getting the dates all messed up. He still was reluctant to admit that she had a Chiari. I, however, saw her MRI films myself when her current neurosurgeon had diagnosed her. We then started talking about her current headaches.

In talking about her current headaches, the neurologist once again said that she could still be having migraines. He looked at me and said, "Don't migraines run in the family?" Yes, I do have migraines, BUT they don't run in the family. Nobody else in the family suffers from them. Only me. I then explained that I don't feel like her headaches are migraines because I can almost always attribute them to a certain incident. For example, Emily's headaches stopped once she had the brain decompression surgery for her Chiari. She went almost a full year being headache free. Then we had two incidents happen that brought her headaches back. One was the flight we took on an airplane (the neurologist said, "Oh yeah, that will do it.") and the other incident was when Emily's head was slammed by the car door. Those are the events that led to her shunt revisions this June. Then I told him that ever since her revisions this summer, Emily has had very minor, but frequent, headaches. I informed him that we are seeing the neurosurgeon on Tuesday to get her shunt checked. I told him that I was concerned that her shunt may be overdraining. I also told him my concern about her easily getting dehydrated and if that could be contributing to it. Emily doesn't recognize when she is thirsty and we have to force her to drink at times. The neurologist then said something that finally made some sense. He said that it is possible that her sodium level is low. She eats like a bird anyway, and doesn't drink anything that has sodium in it, and it is possible that she is getting dehydrated because she doesn't have enough sodium in her system to retain the fluid. He mentioned to me to start making her eat saltier foods and see if that helps some. He also had mentioned that he could give me some medicine to make her retain her sodium levels, and I just looked at him like he was crazy. Was he really going to prescribe that kind of medicine to my child without having her sodium levels checked????? Not that I want her to have a blood test, but come on!!!! There is no way in Hell that I am giving her a medicine like that without having something that tells me that it is needed.

While I admit that there might be something related to the sodium levels, dehydration, and possible overdraining of her shunt, I still think this neurologist is a quack!!!! We will wait and talk about this with her neurosurgeon and get her shunt tapped and see what happens from there. In the meantime, I am going to give Emily some Gatorade to drink instead of water, and also see if my bird will eat anything a little more saltier and just see how the weekend goes.

To sum it up, I don't think we accomplished much today. I guess Emily will just have to rest when her leg hurts, and then eat salty foods.